Monday, December 10, 2007

The countdown to diagnosis has begun

The spinal tap on Friday left me sore and tired. I don't know if it's normal to be so tired but until late on Saturday, I was so groggy I could have just kept on sleeping. I made myself get up and do some things, of course, but I certainly could have slept.

The countdown has begun. They told me that it could take up to two weeks to have all the results back. I don't know if that's because they culture the fluid or what. I know very little about the processing of CSF. I'd welcome any comments from people who know something about this testing, because I haven't really researched it. That's not like me. I normally read the hell ouf of everything, but life has been too busy. And maybe there are too many things I don't want to know.

The leg weakness was bad yesterday, from the time I got up. Today it's better, but my back still hurts (ever since Friday). Maybe that's leading to the weakness. Who knows. Had a little trouble with my eyes yesterday, too. I don't know if this is MS or if I'm just crazy. I suspect I'm not crazy. I know some crazy people, but I don't think that is contagious. :-)

What is it like to go through all of this? It's frustrating, first and foremost. I question myself constantly, wondering if I'm imagining things. Since I am in limbo right now - the radiologist calling it MS, the neurologist holding his tongue until the CSF tests come back - I am biding my time, wondering if it's not MS, then what is it? What is making my mind so muddled? What is making my legs weak? What is making my hands feel shock-like sensations in the morning, making me sometimes drop my spoon? What is this mystery that has followed me for 13 years?

The first time I had weakness and balance issues was in 1994, when I was in Seattle. It wasn't my native land, so to speak. I grew up in Houston, TX, and had spent the last 12 years in coastal NC. I was used to sun and warmth. In Seattle, there was sun sometimes. Most often it was overcast and drizzly. Sometimes it downright poured. If you have seasonal affective disorder (SAD), which really just means you get depressed when it's nasty weather outside (therefore the "seasonal" part of the term - we have problems when the weather changes for a long period of time), you may have additional symptoms when the weather is bad for a long time. So I figured that was my problem in Seattle.

After my year out there, for a work project, I moved back to the East Coast and enjoyed a lot more sun. I was forever changed, though. My go-go-go nature started to slow down, and not just because I was in my early 30s. I went from driving my family to keep up with me to taking naps and needing a lot more rest in general. At first, it wasn't so bad, but when these things continue and worsen, it's life-changing. More things happened, other than just the fatigue, but enough things happened to lead me to more doctors. For many years, I've just lived with a diagnosis of fibromyalgia (which didn't explain it all). In addition, I had many surgeries. Lots of problems with my neck and lower back. I won't bore you with all of that, but let's just say I've never quite gotten back my go-go-go nature.

This is the beginning of the countdown. I'm sure I'll be fretting more and more as I wait. Tomorrow maybe I'll do a book review for you. I have a good one I just finished. I'll work on that to take my mind off things. Until then...

Peace - D

2 comments:

KarmaCreations said...

Hey Honey,
Just getting caught up on you and the whole situation. I am SO sorry you are going through all this! This has to be a very rough and scary time for you. I'll be sending you good thoughts and prayers for health and healing. Take some time to treat yourself well, I think you need it right now! Reach out if you need an ear, I'm here for you!!
HUGS,
Karma

Patrick said...

Remember to breathe and that you are much loved.